About Me

---

Born in 1978, and diagnosed at birth, having Cystic Fibrosis always seemed to play bigger role in my family's life, than mine. It was always part of me and I never knew any better... never knew what is was like not to cough, not to eat enzymes before a meal, and not to always have a puffer around. Entering my teens was a rollercoaster of hospital admissions, school and usually teenager anxieties. But in my eyes everything was normal.

My twenties was a period of ignoring Cystic Fibrosis.... while the coughing and enzymes were a giveaway of my hidden disease, I made sure I lived every moment to the fullest. Traveling and living abroad, nothing could stop me trying to be accepted as normal, while something inside was a constant reminder of things being not quite right.

I was never a repeat customer of any physiotherapist, cycling was providing all the airway clearance I required... or so I thought. Pushing my own limits on a daily work commute and longer weekend rides. I was a true weekend warrior (or cougher). The burning of my lungs on steep climbs was excruciating, and while I believed this was normal, I could be heard coughing from miles away. The pain in my lungs would be my indicator of climb category.

In my late 30's digestion started to impact me more and more, also sneaking up on me was dehydration issues and the all too often hospitalisation due to Distal Intestinal Obstruction Syndrome (DIOS)( complication of Cystic Fibrosis). The pain was unbearable, but became a standard routine in me instructing the emergency department in the steps required to get me on my way. This and Covid meant I started reducing my time on my bike.

While people say their life started at 18, 21 or 30.... mine started in 2022. After the first few doses of a gene modulator and the resulting purge which is well documented, things changes. I stopped coughing, no more infections, no more hospital admissions for DIOS.... I started picking up weight quicker than even and my body was becoming normal. Gone were the days of eating and enter slab of chocolate with no consequences.... now it we straight to my bad bod.

To loose the extra weight I decided to slowly start commuting to work (33km each way), the beginning was tiresome and difficult...... BUT... I became faster, I became stronger and started loosing the weight. My Power to Weight ratio increased, my VO2 Max increased and I was becoming stronger everyday on the bicycle. My lungs were no longer burning, and now only my legs... for the first time in my life I would cycle for 2 hours and not cough once... not once.